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Help With Decision

User
Posted 15 Jun 2020 at 16:59

As Mark says it’s not as bad as you think. All over pretty quickly and you are home before you know it. Recommend taking some lactulose with you just in case you get constipation. Full length size zip trousers are good for management catheter bag on the way home post op. I wore mine all the time until it was removed at 14 days. Get a Builders bucket to stand you bag and stand in at night as keeps it extra stable. I also got waterproof protectors and tena sheets for the bed but did need them. If you are going private recommend a media player with extension power adapter and long hdmi lead :-)

Please keep us posted.

Simon

User
Posted 15 Jun 2020 at 17:42

Good luck. I had my RP March 23rd- so 12 weeks ago today. As others have said its not too bad- just take it easy afterwards. I'm running and cycling again and life just about back to normal.

User
Posted 15 Jun 2020 at 17:49

I am back to full speed now but it took around 9 months or so for me to get to this point (30 mins exercise a day plus golf twice a week) as I had a couple of set-backs. It may take longer than 3 months but things will get to normal...main thing is not to rush it and allow the body to heal! I think I rushed at the start and should have heeded my own advice but then hindsight is a wonderful thing!!

User
Posted 16 Jun 2020 at 09:31

It's one hell of a decision to make, but your thread shows that you have weighed up the options and have chosen your treatment which is a huge step forward. As always, great advice from fantastic people on this forum. 

At least now you can focus on the 25th and your recovery.

Good luck!

Kev.

User
Posted 16 Jun 2020 at 12:44

Thanks: MarkBerks, Techguy, MikeW, KevT.

That is all very reassuring. I will certainly provide updates on everything goes.

J

User
Posted 17 Jun 2020 at 09:57

Good luck and don’t worry too much...it will go well :-)

Cheers,

Mark

User
Posted 18 Jun 2020 at 22:45

I am 63. My RP was done sept 18. I was T3. All my follow up tests have undetectable PSA. I now live a normal live as if it never happened. Even my ED is dissipating and I can now have penetrative sex (took at least 12 months to come back to life lost about 60% of nerves). Keep exercising and do your pelvic floor exercises - a great investment into future recovery. For actual recovery be patient, follow the guidance given, start walking early in recovery but don’t over do it. When the nurses advise restart pelvic floor exercises - the stronger these muscles are the better your bladder control. Any pain is treatable by paracetamol- after 3 days post surgery you’ll see daily improvement.

i have not regretted my decisions.

User
Posted 19 Jun 2020 at 07:50

Thanks A John. Just what I needed. On my way for pre-op.

J

User
Posted 19 Jun 2020 at 17:42

Good luck J ... hope all goes well next week.

Andrew

User
Posted 19 Jun 2020 at 17:57

Hi Simon,

My apologies for delay in replying - not been on the internet much over last week.

Thanks so much for the info.  It's interesting to read your journey to date along with your decision process.  Both consultants (Oncolgy & Surgery) I've spoken to seem to be saying that surgery is my best option.  That's probably my favoured route ... if that's the right word!!  But I'm also in the process of arranging a second opinion from a very good consultant surgeon in Manchester.  He works at The Christie Hospital and has been recommended to me by a friend.

I'm hoping to be able to make a decision in the next couple of weeks and then get it over with!!

Thanks again Simon - it is very much appreciated.

Best wishes,

Andrew

User
Posted 29 Jun 2020 at 16:50

Burghboy

How was surgery? Hope you are making a good recovery.

TG

User
Posted 29 Jun 2020 at 18:11

Hi Techguy and all. Sorry for the delay on an update.

Surgery Thursday June 25. Got out Sunday 28th. Bowels very slow to respond and very sick on second morning. Hence the extended stay.

The surgery went very well. Nerves spared fully on right side and partially on left side. Surgeon said the prostate was smooth, so fingers crossed that cancer is contained. Good join back to bladder with Catheter out in 7 days.

I'm amazed at how well the wounds are healing and very limited amount of pain after surgery. I did take a bit of time to get over over the GA. Need the  bowels  move better and I will be grand.  

Histology to come but fingers crossed.

J

User
Posted 29 Jun 2020 at 18:55

Glad to hear it went well.

Once the catheter is out you will be well on the mend 

User
Posted 29 Jun 2020 at 19:40

Thats great news.

I found lactulose syrup (any pharmacist stock it but will probably query use...PCa Surgery gets the nod of approval) is very good but dont take to much or you'll become a SpaceX Falcon 9 rocket. Other things I used were prunes, other fruits but again not silly amounts plus a veg soups and a handful of nuts/seeds were very helpful. Took me about 5-6 days post op to get systems going anything like normal. Try not to strain as that can cause problems with the stitching etc. 

Take it easy and don't be tempted to lift much more than a pint glass for a month. Follow all the guidance with daily walks and a few steps of the stairs etc. 

Fingers cross ref the Histology...hopefully that won't take too long. Mine was meant to take 4 weeks but was in my inbox in under a week so i guess will be how busy the lab is etc.

Keep us posted!

TG

User
Posted 29 Jun 2020 at 20:22

Thanks again Techguy. Taking all that on board. Doing some already. Had two 20 min walks today as well.

Just passed something that might mean progress!

Cheers,

J

 

User
Posted 29 Jun 2020 at 20:28

BB

Yes, should help loads with gut motility. Onwards and upwards to catheter removal.

Have a nice relaxing week and wish you a fast recovery.

TG

User
Posted 30 Jun 2020 at 06:57

Originally Posted by: Online Community Member

Hi Techguy and all. Sorry for the delay on an update.

Surgery Thursday June 25. Got out Sunday 28th. Bowels very slow to respond and very sick on second morning. Hence the extended stay.

The surgery went very well. Nerves spared fully on right side and partially on left side. Surgeon said the prostate was smooth, so fingers crossed that cancer is contained. Good join back to bladder with Catheter out in 7 days.

I'm amazed at how well the wounds are healing and very limited amount of pain after surgery. I did take a bit of time to get over over the GA. Need the  bowels  move better and I will be grand.  

Histology to come but fingers crossed.



Burghboy. Wish you all the best in your recovery. Just 13 days ahead of you wrt surgery. Have you had the "achy shoulders" thing? That disappears after a couple of decent bowel movements.

User
Posted 30 Jun 2020 at 13:46

Hi Alex. Right shoulder very painful on and off for a few days. It's like cramp or something, and couldn't get relief from it. Not terrible in the scheme of things. Nothing in left shoulder.

J

User
Posted 30 Jun 2020 at 13:53

I was warned about the shoulder pain. Thought I had dodged the bullet until evening of day 2 post op. Felt like the bends or such like. Good to know it was trapped gas from the RARP and nothing to be concerned with but was happy to see the back of it after a few days πŸ₯΄

Edited by member 30 Jun 2020 at 13:54  | Reason: Not specified

User
Posted 30 Jun 2020 at 13:53

Hi all. Getting my catheter out tomorrow. What type of pad should I take at this stage?

J

User
Posted 30 Jun 2020 at 14:15

At catheter removal the nurse in London provided me with an adult nappy.

If you have a long trip home try and plan access to a toilet. I nearly got caught short on my 90min trip back as I’d drunk a bucket load of water before being let out to test all was functioning ok.

Some tena level 3 and level 2 pads Are useful to have in stock. I used the three more for reassurance and stuffed one inside the nappy en route home then occasionally used after that. Level two were my mainstay for about five weeks as had a few leaks/drips up to that point.

Post 12 weeks I experienced the occasional stress leak doing light gym weights or dips. Only leak I’ve had recently ~7 months post op is last weekend due to a skinful of Sauvignon Blanc. I’ve found if you keep it to sensible levels should be fine but it’s worth baselining in a controlled environment. 

Sometimes I feel passing wind or sneezing induces the feeling that a drip/leak is close so just have to counter it with pelvic floor.

User
Posted 30 Jun 2020 at 14:37

The feeling of freedom when that catheter is out !!!!!

I used Tena 2 from the get go. Found I was leaking a bit on the way home but not too bad. Once home I'd start leaking from early afternoon and then gradually got later and later in the day until dry at about 10 weeks. 

User
Posted 30 Jun 2020 at 15:29

Originally Posted by: Online Community Member

Hi all. Getting my catheter out tomorrow. What type of pad should I take at this stage?

J

It's a bit of guesswork depending on your circumstances, but as others have said, a level 2 or 3 should be fine.

I bought stock of all sorts of products back in March just as lockdown was kicking in and I was expecting a surgery date for April/May. I figured I'd better get them in just in case there were supply issues as a result of the pandemic.

Amusingly enough though, the pandemic gave me an extra 2 months to work on those pelvic floor muscles. (Although it was funny to see the leaflet say "See if you can hold it for 5 seconds. I was like. OK. How about a minute? πŸ˜€Not for ten reps though 😜Who's got time for that? I mostly did 10 second reps. Sets of 10, aiming for 10 times a day. With one or two "long holds". Also the 'situp' version for extra load.)

The hospital gave me about 3 or 4 pads any and I took a few of each with me to the TWOC appointment. Successful TWOC last Friday. Used a single #2 pad all day. Hardly anything in it. Saturday used a #1 pad. Same result. Sunday decided to go "commando" - no pad. πŸ˜€It was fine.

Still not needing a pad, which is great. Do feel the occasional 'drip' internally, but you can stop it from coming out with the pelvic floor muscles. That happens about once a day when either tired, focussed on something else or having a fart etc.

I'd probably wear a pad if I went on a long car journey or somewhere I'm "not in control of my circumstances". Will be interesting to see the effect of strenuous exercise in a couple of weeks when I'm allowed. But in the interim period, I'm still doing the pelvic floor exercises. I've found that doing the fast reps is best straight after a wee. Then you've got nothing there to come out when you release quickly.

One thing I learnt on day 1 was that if you release the muscles too quickly when doing the exercise, it can open you up and you lose a bit of urine.

 

 

User
Posted 30 Jun 2020 at 16:23

Take something to cover the car seat and  sit on a towel just in case. You are going to drinking a fair bit of water and it might start coming out after your twoc. Make sure you are well hydrated for the twoc don't be tempted to drink less , better to be wet than have the catheter put back in. The Tena 2/3 pads will hold roughly 150/175 ml but a quick gush may be too much for the pad in one go. A slow or controlled flow will probably get absorbed. Have a nappy sack or similar just in case you need to make a quick change.  Remember to relax.

Thanks Chris

User
Posted 30 Jun 2020 at 16:40

Thanks Techguy, Alex, Mike, and Chris. Good advice and noted.

J

User
Posted 01 Jul 2020 at 06:30
I didn't get given anything, so it was lucky that I had brought my own. This was just before lockdown though, so they had other things on their minds. I also pinched one of their sample bottles, as we had over an hour's drive back.

On the pelvic floor exercises, I got the NHS Squeezy app. They do 10 slow, 10 fast as one exercise. Slow is 10 seconds, although the app lets you change the settings. Prior to the op I was doing these 6 times a day (1 as situp) as I wanted to build the muscles up. Now I do 3; the surgeon said that was plenty, as I've not had any stress leaks. Like others, farting has been a problem if I "force" the fart - I guess it's incompatible with tightening the pelvic floor.

User
Posted 01 Jul 2020 at 07:57
Ask for a spare disposable sample β€˜bottle’. We got stuck in a traffic jam on the way home after TWOC, I was mighty glad I had one with me I can tell you! πŸ˜€
User
Posted 01 Jul 2020 at 08:30

I picked up some portable gel urinal bags from amazon. Had used them camping a few years back. Any bottle with a wide usb opening would so the trick.

Finding a place to use it if necessary was a tougher problem on the train(train loo in most of the train was out of order..thankfully explained to the guard and he found one that was operational in the nick of time).

User
Posted 01 Jul 2020 at 22:55

Catheter out today. Small dribble. Pleasantly surprised how well I can hold in, but need to keep concentrating on it. Tena 3 less of a fuss than I had imagined. 

Many leaks along the way. Getting out of car, passing wind, bending over. 

Onwards with the pelvic floor exercises!

J

 

User
Posted 01 Jul 2020 at 23:17

Great news BB

Pelvic floor helps loads especially as you get used to engaging them for coughs and sneezes. This soon eases over time. Initially I found I leaked more in the evenings than during the day I guess due to tiredness. 

Don’t be too concerned as everything soon settles. My leaks pretty much stopped bang on five weeks when the stitches started dissolving around the reconstructed urinary sphincter. Mainly as the valve can close tighter given the stitches can tent to hold it under a slight tension. Additionally the scar tissue will then start to soften over the coming months improving things further.

Shout if you have any problems or questions. 

TG

Edited by member 01 Jul 2020 at 23:21  | Reason: Not specified

User
Posted 02 Jul 2020 at 07:24

Originally Posted by: Online Community Member

Catheter out today. Small dribble. Pleasantly surprised how well I can hold in, but need to keep concentrating on it. Tena 3 less of a fuss than I had imagined. 

Many leaks along the way. Getting out of car, passing wind, bending over. 

Onwards with the pelvic floor exercises!

Glad it went well. Enjoy being bagless. πŸ˜€

User
Posted 13 Aug 2020 at 14:48

Well I got my post RARP PSA result yesterday. 0.2! I could have cried. I phoned the doctors again this morning to make sure there was no mistake. Confirmed at 0.2.

Silly question but I assume I have moved into the salvage RT population?

I have a call with the surgeon tomorrow.

Jim

User
Posted 13 Aug 2020 at 14:58

Sorry to hear this. What was your histology post surgery? 

I suspect RT of prostatic base is a pretty normal pathway assuming they don't take another PSA just to be sure.

Conversation with the surgeon so at least provide reassurance when you have more info.

TG

User
Posted 13 Aug 2020 at 15:05

Sorry to hear that Jim. How was the post op histology on the prostate?

A friend of mine had a similar PSA after surgery and they are monitoring for now. 

User
Posted 13 Aug 2020 at 15:23

Thanks Techguy and MikeW. I get histology tomorrow. Had the PSA done in prep for discussion.

Jim

User
Posted 13 Aug 2020 at 15:32

Please keep us posted!

User
Posted 13 Aug 2020 at 15:47

Fingers crossed for you.

User
Posted 13 Aug 2020 at 16:10

Originally Posted by: Online Community Member

Hi LynEyre. Met with Onco yesterday. Upgraded to T3a. Tumour close to edge of prostate and they are assuming it could have leaked. No lymph node involvement. 

It seems the onco you saw in February was spot on with his / her advice - it had already leaked. I would ask for a referral back to the same specialist now - don't let the surgeon persuade you to wait for a few PSA tests 'to see whether it drops further'. 

It won't be salvage RT - it is called adjuvant RT if it is either pre-planned or is required immediately following the primary treatment.  

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Aug 2020 at 20:21

Thanks LynEyre.

I guess that it has leaked or something left behind? Nerves fully  spared on right side and partially on left. Maybe an issue here.

Histology tomorrow. Hopefully that may shed some light.

Apologies if you get two replies. Thought I sent something today but can't see it anywhere.

Jim

User
Posted 13 Aug 2020 at 20:24
Sorry to hear this.

Suggest you do some reading up / review of posts here on RT to get a feel for the preparation, execution and follow up.

It isn't as overtly tough as RP but is more of a slog with (sometimes) bowel and bladder issues.

Keep up the kegels and penis rehab and stay positive.

P

User
Posted 13 Aug 2020 at 20:41

Good advice Pete and I will.

Jim

User
Posted 13 Aug 2020 at 23:08

Burghboy

I had SRT to the Prostate bed but it still didn't get the cancer. I would be pushing for one of the tracer type scans, if you can. The histology may provide some more data. I assume your first PSA was close the recommended minimum Six weeks post op. My surgeon has any post op result in excess of 0.09 retested immediately. 

Thanks Chris

User
Posted 14 Aug 2020 at 08:08

Thanks Chris. The PSA was done a few days after the 6 weeks post op.

Talking with surgeon this morning and will have more info.

Jim

User
Posted 14 Aug 2020 at 11:08

Hope that consult goes well Jim and that you get answers to all your questions and a clear way forward πŸ˜ƒ

User
Posted 14 Aug 2020 at 17:35

Thanks Alex. 

Histology shows cancer has broken out. More extensive in Prostate than previously diagnosed. Originally left side Apex, but now also base and positive margin there. 

No Lymph node involvement. Gleeson confirmed at 7 (4+3).

Surgeon was immediately indicating RT. Going before MDT now for plan.

Jim

User
Posted 14 Aug 2020 at 18:42

That sounds decisive at least and that it's moving forward. Sorry to hear about the breakout though. Not the best news. πŸ˜ƒ Sounds like they will have a pretty good idea of where to target with the RT though.

Edited by member 14 Aug 2020 at 18:43  | Reason: Not specified

User
Posted 15 Aug 2020 at 09:32

Not the best news Jim but seems they know where to target. Best wishes

User
Posted 15 Aug 2020 at 10:58

Thanks Alex and Mike. 

Yes hopefully they can target the right place with RT. Right now I feel like I am at the top of the slippery slope.

Jim

User
Posted 02 Sep 2020 at 16:12

Update. I met with the Oncologist yesterday (1/9/2020). She was very positive about my histology. Only 1 mm of remaining positive margin at the base and she is confident to treat.

She has asked for a repeat PSA in 3 months. If the same as post surgery at 0.2 or above, then will move to RT and HT (2 years).

Any thoughts on this most welcome.

Jim

Edited by member 02 Sep 2020 at 16:12  | Reason: Spelling

User
Posted 20 Nov 2020 at 08:52

First post for a while.

Gleason 7 (4+3). Surgery June. Positive margins and PSA 0.2. 

Oncology wanted to wait 3 months before a decision on next steps. They were not concerned with the short delay and time to ensure the surgery had healed. Particularly the new join to base of the bladder.

Got my new PSA yesterday. 0.5! You could have knocked me over! Can't believe it has risen so quickly. Any thoughts on this from the community?

Apart from the positive margins, the surgery has been good. Dry from night one. Fairly quickly off pads. I moved to 5mg Tadadifil and that has help. Getting erections just about strong enough for penetration. Also nocturnal movements.

This progress is about to be stopped as I will definitely be starting RT/HT in the very near future. Can the community remind me the advice on pumps to keep things healthy downstairs. Both NHS and the cheaper web site products.

Many thanks for your help.

J

 
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